3 Weeks Post-Op

Friday, June 1, 2018

I am 3 weeks post-op and 6 weeks post-chemo today.

Infection Scare

I had a scare on Monday that prompted a call to the on-call doctor. I was sitting on my couch and noticed a weird smell. I went up to the bathroom to take a look and I swore that my incision was infected. it looked redder than it had before and there was a spot that was white where there was what I thought was pus coming out of it. Gross, I know. In addition to that, there was a good deal of swelling, the pain in my armpit had gotten worse over the course of the last 3-4 days, the bruising had gotten quite a bit redder and darker, and there was also some stippling and some new visible pockets of fluid on my breast. I wasn’t sure if the swelling was normal swelling or the start of lymphedema. The resident on call was the one who’d scrubbed in on my surgery. She gave me a prescription for an antibiotic and suggested that I be seen in the office Tuesday, and that if it got worse, I should go to the ER.

On Tuesday, I got an appointment for late morning. My surgeon is normally in surgery on Tuesdays all day, and I already knew they’d have to fit me in between cases, so I was prepared to do some waiting.  When the surgeon looked at my incision, she said that it was all normal. The spot on my incision I thought was infected was where 2 of my incisions intersect. Because of the way that the skin is put back together, the skin at that juncture doesn’t have the same blood flow as before, and as a result it needs to grow new skin. The fluid there isn’t pus but protein, which is needed at the site to grow new skin. Huh. I spose I could have thought about it more and realized that it was fine, but with the emphasis on all the stuff that could go wrong, along with the horror stories from some other survivors I’ve talked to, I decided it was worth getting it looked at. The new coloration on my skin was due to the deeper bruising from all the extra work she had to do on the breast with the tumor and that it would look like that for a bit. She said the seromas (the visible pockets of fluid) were also normal and that she didn’t want to risk infection by trying to drain them, and I could stop taking the antibiotic.

In general, I’m still doing really well. While I can lift a little more than 5 pounds, I’m not going crazy trying to carry things beyond my capability. I still can’t reach out to my right or above my head on my right side. My left feels almost normal again except for the numbness in my armpit and my nipple. There are a few stretch positions that are still tight, but for the most part I’m pretending to be left-handed until I heal more.

Graduation Day

Today is also the day I had wanted to be back in Minnesota for my niece’s high school graduation. Surgery put a crimp in those plans. While I was out running a few errands after the visit with the surgeon this morning, I got a text from my sister letting me know that my brother-in-law would be live streaming the graduation on Facebook because I wasn’t able to be there. I’m grateful to him for doing this for me!

When I got home, I started unloading the truck. I bought a handful of plants and had the new planters in the back. I took the groceries upstairs and got on my computer to watch graduation. I was happy to see her so happy after she got her diploma!

Chemo Brain

After graduation was over, I realized none of us had prints of my nephew in his cap and gown. I had asked my sister to have someone make sure to get good photos of my niece. She did, and they look great! I started looking on my drive for some pictures from my nephew’s graduation I’d taken 4 years before. I was able to work on my photo drive and clean things up for maybe 4 or 5 hours. That’s a long time for me to stay focused on something these days.

The next morning, I woke up around 10 and was still reading in bed at noon-thirty when my neighbor texted and told me that I’d left my truck gate open.

Shit. Really?

This. is. chemo brain. In. Its. Full. Glory.

I can be in the middle of something and completely forget what I was doing and not remember to go back to finish it. I have to remind myself to remind myself to go from Step A to Step B to Step C without skipping B in the middle because I can do it later. It doesn’t work that way for me right now.

God, I hate chemo and cancer. I so wish there were another way.

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2 Weeks Post-Op

May 25, 2018

I had surgery 2 weeks ago. I had my 10 day post-surgery follow up on Monday, which went well.

Today, I had my first appointment with a speech therapist to do some assessment and treatment planning for my chemo brain. It was a 2 hour appointment, and was really interesting and informative.

Chemo brain is seen by the people who actually study it as a brain injury. One of the main aspects of this injury is brain fatigue. This is one of the things that sets my memory issues apart from those that are happening because I’m “getting to that age.” When it’s chemo brain, my brain literally hurts and gets tired. Sometimes to the point of complete mental exhaustion, so when she mentioned “brain injury,” a light went on.

I have a friend from high school/college who’s been down this path and then some. He suffered a traumatic brain injury in an accident many years ago. He now writes about his experiences. I have a whole new respect for what he’s had to overcome and the amount of patience it’s taken for him to get where he is today.  I also have a better understanding when he writes about feeling brain-injured. Sometimes I feel that way, too. He was kind enough to let me link to an article he wrote for Brainline on what it feels like to be brain injured.

Back to my appointment… after going through all the testing and exercises, she’s decided to get me set up on an app called Constant Therapy. This app, which is kind of like a series of Facebook quizzes, was designed by people who understand brain injuries so it actually measures things pertinent to the damage the chemo’s done to my brain. Some of the exercises are like Facebook quizzes. The difference is that these are set up to help rewire those parts of my brain that are injured and not just test nonsense.

My niece turns 18 tomorrow and graduates next week. I’m so proud of her! Today starts Memorial Day weekend. Normally, I’d be going away somewhere to relax because I have an extra day off. This year, my relaxing will be done at home. I’ve got flowers to plant and little jobs at home to do. It is enough.

Posted in Milestones, Surgery, Therapies, Treatment | Tagged , , , , , , , , , , , , , , , , ,

10 Day Post-Op Appointment

Monday, May 21, 2018

I had my 10 day post-op appointment today. I was looking forward to getting the drain removed.

One of the things I like about this surgeon is that she’s not only a great surgeon and doctor, she’s also apparently a great teacher as well. I don’t remember any of my other teaching surgeons having so many residents working with them. Today, I met another one – my fourth with her. He took notes on where I am with the drain and how things feel. I’ve asked them all what they want to do when they’re turned loose to practice medicine. Dr. P. said he wanted to be a general surgeon. When I asked why not breast oncology, he said that it intimidated him. He knows what a gall bladder looks like and where it is. Every cancer, on the other hand, is different. This is understandable. I’d be concerned about doing the right thing for my cancer patients. I’d be worried that I didn’t get it all or that in order *to* get it all, I had to do a much more radical surgery than the patient was prepared to have. I appreciated his honesty. I hope he keeps that when he goes into practice.

When the surgeon came in, she had another resident with her. Dr. L. was very quiet and when asked, she said she wanted to go into breast oncology. I hope she is able to learn all she can from my surgeon, because she’s *really* good at what she does.

Removing the drain is done in the treatment room. She clips the stitch that’s holding it in, and then pulls the drain out really quickly. She let me know it would feel weird coming out – it did, and it didn’t hurt. I was a little surprised that she also removed the surgical glue. When I had the port put in, the glue just came off on its own. I thought the same would be true with these incisions. The incisions looked a little different, in a good way, without the glue on them. It was easier to see how they were healing.

I had noticed that I had feeling back in my right nipple last week but not my left. I had called the nurse to ask her when I should be concerned. I knew one week post-op was too soon to be worried. She said if it still wasn’t back after a month, I should be concerned, and that some women never get it back. That freaked me out a little. This was the side where she just did a routine reduction, not the side where she had to tunnel under a bunch of major nerves to get to the lymph nodes, and there were no lymph nodes removed on my left side. When I mentioned to the surgeon that the feeling wasn’t back on my left side even though it was on my right, she told me it would come back. I asked her to let the nurse know that telling patients that it might not come back at all is probably not something she should be saying to someone calling one week post-op.

After my appointment, I walked over to the Oncology Infusion Center (OIC) to talk to the oncologist’s nurse. Somehow the anesthesia scheduling person managed to cancel ALL of my prescriptions before my surgery. There are still a few things I need to have open – like the lidocaine cream I put on my port for infusions, massages, acupuncture and anti-nausea meds. I hadn’t heard from the nurse that she’d gotten this fixed, so I wanted to double check with her while I was already there. On the way between buildings, I realized I’d forgotten my hat somewhere. When I got to the OIC, I was talking to the guy at the desk and asked him to call over there to ask if they had it so I could go back and pick it up.

While I was doing that, I told him the surgeon’s phone extension – at that point my oncologist’s nurse was standing nearby and said, “Look at you! What chemo brain?!?”

It had been an entire morning of chemo brain, and I told her so. I remembered putting the hat on in the car while I was in the parking garage. My hair’s not quite half an inch long, and the chemo makes me more sun sensitive, so I don’t go outside without a hat. I don’t remember where or when I took it off. I was pretty sure it was in the treatment room, but I couldn’t be sure. I’d stopped in the bathroom and spent some time in the waiting room where I was trying to fix something on my phone. Any other time, I’d have remembered exactly when I took it off and where I set it down. With chemo brain, it’s a blank. I can remember pieces of where I was, but not all of it.  Chemo brain is exactly this – my brain can only focus on exactly one thing at a time. If I am doing something and get interrupted, I will either forget what I was doing, or forget pieces of what happened in between when I try to remember later. In the end, I had to walk back over to the other building back to the surgeon’s office. They couldn’t find my hat, so I had to leave without it.

For those of you who haven’t had chemo and don’t understand the depths of chemo brain, this was deeply disrespectful and rude. This is a person who is allegedly trained to work with cancer patients who are receiving chemo. Making fun of patients struggling with chemo brain is uncalled for. This isn’t the first time she’s been dismissive of something I’ve reported to her as a problem, and it’s not the first time she’s made a comment about chemo brain. If it were up to me, she wouldn’t be working in oncology.

When I was done at the hospital, I drove up to my favorite mall. I bought a new hat, picked up a few other odds and ends and got a foot massage. Before I left, it occurred to me to look for a sports bra when I saw the Pink store. They sent me over to Victoria’s Secret.

Ladies, if you *ever* have to go through this, Victoria’s Secret isn’t where you want to be 10 days post-op.  Why? Unless you can find a front-closing bra-let, forget it. Their sports bras still have a wire, and between the wire and the “squish-factor,” it’s too much.

Aside from that, I had been really emphatic with my surgeon that after ensuring that she’d gotten the margins and then some so I’d never have to do this again, I told her that I wanted to be 2 sizes smaller than I was when I started. So, when I walked into VS, they asked to measure me. When they did, they said I was still the same size as before. What?!?!? NOOOO!!!! I *just* had surgery and was supposed to be a “B” cup! This can’t be happening! It’s not their fault that I’m still really swollen and they are still pretty much the same size as before. It was a hit to my psyche that I wasn’t expecting. Now I know not to go bra shopping until at least September/October. Until then, I’ll make due with the surgical bras.

I ended up getting a couple of the VS sports bras so that I had something to wear while my surgical bras were in the laundry.

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1 Week Post-Op

May 18, 2018

I had surgery a week ago today. My friend went back home 2 days ago. I was sad and nervous when she left. Luckily, I have some great church friends from Houston that stopped by to visit yesterday. I had some help with a couple of chores, and then I introduced them to Boehm’s Chocolates. Boehm’s has a chocolate cherry candy called The Rainier. They’re really, really delicious!! We went to the store in Issaquah and picked some up for Father’s Day. For dinner, we had pulled pork sandwiches from and Stan’s BBQ. Stan’s reminded me a lot of the BBQ we had back in Houston. I’ve missed that along with decent Tex-Mex. They were kind enough to stop at the grocery store with me, and I’m so glad they came up from their trip to Portland! I really enjoyed spending time with them!

The left is better than the right, but it’s still uncomfortable to reach on either side. I’m still only able to sleep on my back. I don’t have great range of motion on either arm right now.

I have yellow bruising starting, which is a good sign. It means healing has started and things are working like they’re supposed to. I’m still really swollen on both sides. The drain is still putting out a little over 30 cc of fluid. Getting it out will have to wait until Monday. I’m still wearing the surgical bra and still lining the inside of it with non-stick gauze where it covers the incisions.

How do I feel today? About the same as Wednesday, really. The drain is bugging me a little. I am afraid of accidentally pulling it out while I’m stripping the tubing, which I have to do at least twice a day. I have a log that I have to fill out to show how much fluid is still draining, and when it’s under 30 cc, I can have the drain out. It’s close, but not under 30 cc, so it will have to wait til Monday. Honestly, after the experience I had with the drain in my knee in 1992, I’m good with it being in longer.  I’m putting ice on my chest when I feel like it’s getting too warm and I’m swelling more.

I’m looking forward to Monday when the drain will come out. I have questions for the surgeon. I have feeling back in some parts of my right breast but not my right. I called the nurse today to ask when I should be worried that it’s not coming back. I know that I’m still swollen and it doesn’t seem worth it to go buy new bras yet, so I’m trying to figure out what to wear in between, and what I will be able to wear for radiation. Overall, both sides look really good. They don’t look like mine, but I knew they’d be different, and I’m still getting used to that.

Next up is trying to find more support bras because two won’t be enough to get through the next couple of months while I’m still healing and the swelling is going down.

 

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Time to Party Like it’s 1999?

Today, May 16th, is 5 days post-op. It’s been a great 5 days having my friend here to help after surgery. She was the first friend to come visit me after I first moved to Washington. We spent my 45th birthday in Leavenworth. We stopped at a Sno-Park and quickly learned that we needed snowshoes to go more than about 20 feet on a snow trail. She was here last with her daughters about 5 years ago.

So how do I feel today? Not too bad. I’m not in any pain to speak of. I’m still taking the ibuprofen every 6 hours or so to help keep swelling down. My incisions itch. My armpits are numb. I’ve got some extra numbness in my ribcage on my right side. My armpit hurts a little, and also feels like it’s being chafed. The surgeon had warned me about this and that there’d likely be a numb spot on the underside of my arm. I have what’s called a Jackson-Pratt (JP) drain in my side. It’s got a suction bulb that pulls the fluid out of my breast where the tumor and lymph nodes were removed. The drain keeps that fluid from building up and causing other problems. I have to strip the tubing and empty the drain 3-4 times a day. I check it and empty it about the same time that I’m taking my Tylenol/ibuprofen doses. I’m sure there are people that would be grossed out by it, but for me, it’s better than some other things that could be going on.

The day after I got home, we made a trek to the outlet mall. I needed pajamas with buttons down the front. I had been wearing t-shirts to bed for a while and it completely slipped my mind that I wasn’t going to be able to put a shirt on over my head for a while after surgery. One of the nurses at the hospital had mentioned that Jockey had pajamas with buttons down the front. The only place I know of that has a Jockey store is the outlet mall. It’s been great weather, so a drive where I can look out the window is welcome after feeling like I’ve been trapped in the house for the last 5 months.

We found the pajamas I was looking for along with a few other things. I learned my limitations pretty quickly. Opening the doors should probably not have been on the list of things I needed to do 2 days post-op. After I got home I was pooped. We both decided that Monday would be our day to rest.

Snoqualmie FallsTuesday, the weather was perfect again, so I suggested that we go out to Snoqualmie Falls and walk the trail. I needed to go for a walk anyway, so that seemed as good a place as any. We’d been here before – twice, actually. The first time was when she came to visit in 2010. The next when she was here with her daughters, but it was too late to see much that trip.

One of the reasons I suggested this is that the redevelopment of the trails wasn’t completely done when she was here last, and I needed to be getting a walk in anyway, so why not go there? Seemed a better choice than walking a couple of blocks to Starbucks. Hint: it was.

I drove my friend, the RN, to the airport for her flight home today. Driving was a weird. I can’t really reach up to the top of the steering wheel, so turning is interesting. In hindsight, I probably should have asked my neighbor to get her back to the airport. At the time I felt like I needed to do it for me more than anything else. Afterward, I knew enough to stay home for a couple of days.

After I got back home from dropping her at the airport, I noticed that the surgeon sent an email letting me know that she received the pathology report. She was able to remove enough margin around the tumor to get all the cancer, and that only 4 of the 20 lymph nodes removed still contained residual cancer. The 4th one was new, but the cancer had apparently not gotten far because it, like 2 of the other 3, had resolved itself via chemo.

I am very happy with this news! But why am I not thrilled by it? I feel like I should want to celebrate and throw a party and I don’t. Why? What’s wrong with me?

Part of it is that this diagnosis didn’t send me to my knees. Maybe it would have if it had been another type of cancer. Or probably because I actually listened to the lyrics of The Great Purple One’s song, “1999.”

I was dreamin’ when I wrote this, forgive me if it goes astray
But when I woke up this mornin’, could’ve sworn it was judgment day
The sky was all purple, there were people runnin’ everywhere
Tryin’ to run from the destruction, you know I didn’t even care

Say say two thousand zero zero party over, oops, out of time
So tonight I’m gonna party like it’s nineteen ninety-nine

This isn’t a dream (unfortunately). It’s not over. I’m not out of time. I’m gonna be here a while. Hopefully a long while.

The chemo did its job and the surgeon confirmed that the margin they took out was more than adequate, so I’m in the clear. I’ve still got radiation to tackle, and then 6 more months of Herceptin before I’m declared done except for keeping up with all the diagnostics.

Cancer didn’t win.

Posted in Chemo, Milestones, Surgery, Treatment | Tagged , , , , , , , , , , , , , , , , , , ,

The Surgery

Friday, May 11th, and surgery day is upon me. I have to be at the hospital at 7 am to start surgery prep. I scheduled my Lyft ride to pick me up at 6 am. I know what traffic looks like to Seattle on Friday mornings, and I didn’t want to take any chances of being late.

I get checked in and use the bathroom. A parade of nurses and specialty people start coming through. First is the surgical nurse. She gets me a gown and a bag for my clothes, purse and phone.

Next is the phlebotomist who is there to access my port. His name is Nestor. He’s an interesting guy. He says his son has decided to go into nursing as well. He wanted to be an architect and his sister convinced him, when he came here from the Philippines, to give healthcare a shot. He’s loved it ever since. It’s the ones who have stories to tell and are comfortable with people that make the best nurses. He’s one of those people.

I’m getting texts full of well wishes from friends across the country. I’m surprised that so many of them knew to text me before surgery, and it makes me smile. I’m even getting texts from people I’ve never met letting me know they’re praying for a successful surgery. I feel blessed.

The anesthesiologist and anesthetist nurse come in next. We talked about how I stayed really foggy and was nauseated after waking up from my port surgery. I explain that I’ve had a lot of surgeries and have never felt that bad after waking up. They decide to use more IV and less gas.

There’s a lot of waiting in between steps. The nurse comes in to apologize for the surgeon. I already knew that she didn’t operate until at least 8:30 am so I’m not too worried. The surgeon and resident are finally here. We chit chat a bit and then she gets out her Sharpie. She has a compass and draws lines across my chest. The lines are all very geometric. I think I look like Da Vinci’s “Circle of Life.” She takes some photos and tells me we’ll be ready soon. After I’m alone again, I take a selfie so I’ll remember what I looked like before. In hindsight, I should have had her take it for me.

After wheeling me into the operating room, I note that it’s not as cold as those before I’ve had knee surgeries. She says they don’t need it as cold for this type of surgery. I am moved over to the operating table. There’s all kinds of stuff going on now. I’m being hooked up to the IV, they’re putting compression massagers on my legs to prevent clots and deep vein thrombosis, they’re positioning me on the table and I’m talking with the anesthetist nurse about traveling and partying in Ibiza through my oxygen mask. He says he doesn’t want to be *that* 50 year old guy partying with the kids. I ask why not. And then I’m out.

I vaguely remember the recovery room. I remember being told I was in recovery. I remember being told that when I heard a beeping noise that meant I needed to be breathing deeper. I’m so tired and still so asleep.

Lake Union - From my Hospital BedA while later, I’m wheeled into my room. According to the reports, this would have been around 2 pm. I remember being told I was in my room and I remember saying I just want to sleep, and the nurses tell me that’s okay. About an hour later, they come back in to check on me. I’m a little more lucid, but still pretty groggy. Lucid enough to look at the clock and see that it’s about 3 pm, though. The nurses and residents come in separately to check my incisions. When they open the surgical bra, I’ve got some weird nerve thing going on because my breastbone is burning and feels tingly. There are pieces of gauze over the incisions to protect the bra and my clothes. Everything apparently looks good and after emptying the drain, I go back to sleep.

When I wake up again, it’s about 5:30 pm. I’m not hungry. I’m still tired. I look out the window and am impressed by the view. The nurses take my vitals and empty the drain, and I text family and a couple of friends that I’m sort of awake and that surgery went well. I look out the window and am delighted at the view. I can see my old office from here. I’m still tired enough that I don’t stay awake very long.

Downtown Seattle - Looking North to Lake UnionNext time I wake up it’s 7:30 pm. This time I’m awake. I’m starting to get hungry. The view out the window is beautiful. The sun is just starting to set over Lake Union. I ordered some food and have gotten up a couple of times. I still have the compression massagers on my legs and they say I have to have them on all night. They’re a bit of a hassle to get off and I’m a little afraid I’ll forget they’re there and try to get up myself. After dinner, I am out of bed for a walk down the hall. We walk slowly to the end of the hall where there’s a floor to ceiling window looking toward the lake. This is much better than trying to take the picture from my room! When I get back, she teaches me how to strip and empty the drain myself. I’ll have to do this for the next 7-10 days.

By 10:30 I’m getting tired again and let the nurses know I am ready to sleep again. They bring me some toothpaste and take vitals. I start what is a not at all restful night. I am woken up for meds at midnight, right after I’d just gotten to sleep. I woke up again at 3:30 needing to use the bathroom. She decides to do vitals while I’m awake, and I let her know we’re off schedule for the ibuprofen. She says she’ll be right back. After 40 minutes, I turn the light off and go back to sleep. She comes in 30 minutes later with the ibuprofen and insists I have crackers with it because it is hard on the stomach. So I eat crackers in bed at 4:00 in the morning. She says she’ll let me sleep til 4:30. When I wake up again it’s 6:30 am and the surgeon is here to see me.

The surgeon asks what I think, and I tell her it looks good. I’m swollen and my chest looks very different than it did the last time I saw her. She checks the incisions and tells me that it went well. She says she’ll call me with the pathology results as soon as they come in, and she’ll see me in a week to 10 days to remove the drain.

The nurse comes in shortly after and shoves a menu into my hands saying something about needing to order breakfast soon. I am barely awake and am not hungry yet. I have no idea what I want other than to go home where I can sleep.

The residents come back to check my incisions. One of them suggests that instead of gauze I could use a sanitary pad over my incisions to help keep the fluid from staining my clothes. We talk a little about the specialties they want to go into. One of them wants to be a cardiac surgeon and the other a radiologist.

I am finally hungry enough to order breakfast. Another nurse comes in and I ask about getting a shower. They decide that I have to wait for 24 hours for a shower so that the glue on my incisions can dry. She comes back with a warmed package of bath wipes and helps me get cleaned up and dressed. I let my friend know that I will be ready to go soon and will let her know when to leave to get me. I completely forget that there was a ton of I-5 construction this weekend.

The last person I need to see before I leave is the in-patient physical therapist. She and I walk the hallway talking about what lymphedema looks and feels like and what I can and can’t do with my arms to prevent it. I can do some exercises on a pillow, I need to sleep with a pillow under my arms, and I can do hanging arm circles.

I’m now ready to go. They’ve called for patient transport (aka a wheelchair). I’m still getting my things together when the guy arrives with the chair. He’s earlier than we expected. He wheels me down to the door and waits with me until my friend arrives to take me home.

Thankfully, my friend and I stopped to pick up a bite to eat on the way home or I’d be kind of screwed because I can’t open the refrigerator door and I can’t reach the microwave.  I’m relieved to be home. Now the healing can begin.

Posted in Surgery, Treatment | Tagged , , , , , , , , , , ,

Pre-Op Surgical Appointment

At the pre-op appointment on April 26th, I met the resident who would be scrubbing in for my surgery. She was nice. I liked her. We talked generally about the procedure and if there are any concerns I have.

Any concerns…  Well, yeah. I have a list. I have a tumor that started out the size of a plum in my chest. My first and primary concern is that the cancer is removed and she gets it all the first time. My post-surgery limitations are next on my list. I ask for someone to stretch my shoulder out while I’m under. I’m worried about lymphedema. I’ve heard and read quite a bit now about side effects of radiation, and I’m concerned that between the surgery and radiation the range of motion in that shoulder will be more limited than it already is. Not that it’s horrible. It’s just not what it was before, and it’s gotten a little worse over the years. I have other nightmares about radiation but I need to save those for the radiation oncologist. I let them know that I had problems with the anesthesia when I had the port put in, and that I also don’t want opioid pain killers after surgery.

I will be having a partial mastectomy, lymph node dissection with a bilateral breast lift. It all sounds a lot more glamorous on paper than it does in real life. This isn’t a boob job. Really, it’s not. This is removing a tumor the size of a plum from my right breast and making both sides more or less match in size. Even if I had wanted implants, I’m not a candidate because of the radiation.

When the surgeon comes in, we talk about the chemo and some of the side effects that are causing issues for me. She makes the right kinds of faces. I feel vaguely comforted. We talk through the surgery. She draws some pictures of what the incisions will look like, and that with this plan, she will be able to get to the lymph nodes in my armpit without having to make a separate incision. I’m glad I don’t need a separate incision. I have the feeling that healing in this area is already going to be hard enough without having to worry about what else got cut along the way. At the end of our appointment, she writes a an order for physical therapy with lymphedema prevention, and we all agree that I will alternate Tylenol and ibuprofen every 3 hours to manage any pain that I have after surgery.

I am shepherded to the scheduler’s office where I sign the consent paperwork and get the pre-op instructions. We talk to the anesthesia coordinator and work through the list of medications I’m current prescribed and taking, and they say they will figure out what made me feel so out off it for so long after my last surgery.

People keep asking me how I feel about my upcoming surgery. I don’t know how to answer. I am eager to have it done. I wanted it done 5 months ago. I’m more worried about how the radiation will affect me. My first surgery was in my mid-20s when I ripped my ACL in a ski accident. Orthopedic surgeries have been sort of a staple of life since then. While I think 4-6 weeks sounds like a long recovery time, the only other thing that concerns me is that they get all the cancer the first time. I’ve been told that sometimes, after the pathology report comes back, they have to go back in because they didn’t get enough margin. I am planning to be at my niece’s graduation on June 1st, so a worst case scenario would be having to go back in for more surgery.

When I get home, I’m actually a little relieved to have this part done. My leave from work is scheduled and approved. I have support planned for after surgery. I have a friend who’s an RN who will be flying in from MN to help me the 1st week. We are talking about having her daughter fly out at the end of the month to help me get back and forth to my niece’s graduation. I’ll be 4 weeks post-op at that point. I will be able to manage on my own, but won’t be able to lift my bag and certainly not put it in an airline overhead.

The next morning, while I’m in for my first Herceptin by itself, I see an email telling me that I have a message waiting in the patient portal. When the oncologist comes in, she’s looking through the chart and tells me I have a message from the surgeon about the surgery date. Not 5 minutes later, the surgery scheduler is calling me to tell me the same. I tell her that I will stop by after my Herceptin infusion is done. I think she’s freaking out more than I am.

I’m stunned. I’m disappointed. I’m tired of surprises.

When I get done with my infusion, I walk over to the building where the surgeon’s office is and let them know at reception that I’m there to talk to the scheduler. By the time I get there, the rescheduling is already done. When I ask the scheduler why, she hands me the phone to talk to the surgeon. In her email message, she’d said that May 1st wasn’t viable because my body needs to have at least 3 weeks to start recovering from chemo before I can have surgery. She says that May 11th is the first day she could do the surgery. When I get there, I learn she will be at a conference the following week. Over the phone I suggested that we wait until June 3rd, and she says that’s not possible, either. There is a specific window after chemo where surgery can be done. One to make sure that I have a safe recovery, and the other is so that the cancer doesn’t get a chance to start growing again. Great.

My life is on hold yet again.

My first call is to my sister. I can’t make the graduation on June 1st. My next call is to my friend who will be flying in to help me. We have to move her flight. She has to re-request her time off. I’m a little scared that she won’t be able to take leave 10 days later.

I start the process of notifying my managers and contacting the insurance company regarding my leave dates.

I hate cancer.

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